So confused and tired!

[Anonymous]

Hi all

I just found this site a few days ago and already it’s been a huge support to me. There are so many awesome mommies out there!

My DD is 5 months old. Some background…. The first two weeks after she was born were great. Breastfeeding was initially painful, but got better. Starting screaming all day around 3 weeks of age. I called doctors and nurses for support. Was told she was going through a growth spurt and to keep nursing her. One nurse told me that I might not be producing enough milk and to supplement with formula. Starting giving her 2-4 oz of Enfamil Gentlease every day. She was still fussy and wanted to nurse a lot. Did not experience much spit up. We tried swaddling, rocking, white noise, etc. She wouldn’t nap during the day. It took a lot to get her to sleep. We’d swaddle her tight and walk with her for what seemed like hours. When we finally thought she was asleep, we’d try to put her in the crib and she’s thrash her head back and forth and wake up. At her two month appt, shared our concerns with her ped. who though she might have “silent reflux” and prescribed Zantac. It didn’t seem to work for her. The only change we noticed was that she woke up more often at night (started waking up every 1-2 hours). We discontinued Zantac after a week. I first noticed blood in her diaper when she was 2 1/2 months old. Went to an on-call ped right away (not our usual ped). He said it was likely a fissure. Sure enough, he saw one. I tried to share my other concerns… fussiness, no sleep, etc. He told me that there have been fussy babies for years and to toughen up! Boy, did I feel dumb!! We were told to treat the fissue with petroleum jelly. It seemed to go away. I started back at work in May. I work for a school, so I only had to be back at work for a few weeks until school got out. My MIL and mother were able to take turns watching her. I wasn’t able to pump a lot at work, so we increased the formula to about 6-8 oz per day. She started taking longer naps and waking up only a few times at night. Then the blood starting coming back in her stool. She still was fussy, seemed uncomfortable a lot of the time. I called an on-call doctor about the blood. He mentioned that it may be a dairy allergy and to try a hypoallergenic formula. I stopped supplementing with Enfamil and started supplementing with Alimentum (powder) for a few days. But it smells horrible and she didn’t seem to like it so I stopped. By this time she was about 4 months old. At her 4 month appt, a ped said she is likely suffering from a dairy/soy allergy and to eliminate them from my diet. She also gave us samples of Alimentum to try, but really encouraged that I breastfeed exclusively. So, I did my best to eliminate dairy and soy from my diet. I messed up a few times. Her diapers were filled with mucous and had blood in them every now and then (not consistent). We went to the ped office again because of the blood. I was told not to do anything differently and that she would likely outgrow this. But I was going crazy with her crying and the blood!

Now I’m at home again (off work for the summer). I tried nursing exclusively for a couple of weeks, not eating dairy or soy. Blood in her diapers would show and and disappear. She would have lots of gas. I was getting so frustrated, tired and hungry! I’ve been losing a lot of weight b/c of my limited diet. I try to keep eliminating things, but have not totally done TED. I’m also just completed exhausted from it all. So about a week ago I started supplementing with Alimentum (powder) again with the thought of switching completly to formula. A few days ago, we started giving her only Alimentum. She seemed to get more fussy (if that’s possible). She started spitting up much more on Alimentum. Also, her eyes seemd to be red and itchy. However, she started sleeping better only waking up once at night. And she did not have gas on Ali. In the mean time I was pumping to keep up my supply. My husband and I thought she seemed miserable on Ali (spitting up, crying, groaning), so we stopped after three days. I’ve been nursing her again for the past two days. However, now I’m confused b/c her formula diapers seemed to be getting better with no visible blood and she didn’t have any gas on Ali. Now that I’v started breastfeeding exclusively again, she’s have more gas. I’m guessing the mucous and blood will be back in no time. But she seems happier nursing.

Sorry this is getting long!

I’m not sure what to do. I feel like a complete failure! Will I ever get this figured out?? Will her allergies/intolerances be worse b/c it’s taken me so long to figure this out? I feel like the peds I’ve seen have totally failed us.

I need to make a decision and stick with it. I feel like we have been so inconsistent. So, I need some advice.

Should I make the switch to total Alimentum (powder)? As I wrote, she didn’t not seem to have gas and her diapers seemed to improve in three days… however she seemed even more cranky, had more spit up, itchy eyes and it was so hard not to nurse her. I only tried Alimentum for a few days. I’ve read a good trial is really 2 weeks.

Or should I try TED? I’m not sure I can do it. I already seem to be failing with my limited diet (no dairy, no soy)… she’s still gassy and cranky. I’m guessing she’s intolerant/allergic to something else besides dairy and soy. And she wants to nurse so often! I’m not sure I can keep my supply up when I’m losing all this weight. And I’m not sure that I can pump enough when I go back to work. Also, I’m concerned that when she starts daycare, she’s going to go into complete shock from not being able to nurse every two hours (or even more often).

What about meds? Should we see a GI specialist?

HELP! Any advice??

[Anonymous]

Wow…. I am soooo sorry mama! You and your baby have been through the wringer and your ped has been no help to you. I dont have much advise to give on the allergy part so someone else will need to chime in. You might want to consider sticking with the Alimentum a bit longer and pump and freeze your milk in the mean time. Try to give the Alimentum a full 2 weeks before you abandon ship. It is really hard on their tummies to keep switching like that. Still pump and freeze if you want to go back to nursing at some point. OK, as for the rest …… 1. Demand a referral to a pediatric GI. Call the office yourself and set the appointment after you get the referral. Make sure they understand how bad things are. They will find time to get you in sooner that way. 2. Get a new ped. One that will listen to you and support you, not make you feel dumb. 3. Call in the troups. You need help. I can hear it through your words. You need someone to hold your hand, to make you meals and to walk with her for a little bit while you rest or take a walk outside. Do not do this alone. People will be there for you, but you have to ask. We are here for you but only through cyber space. That is not the same. Keep us updated.

[hellbennt]

ack! this is hard!!!!

everyone will tell you something different, but here’s what I’m going to say after reading your post:

1) keep breastfeeding- you can make your milk like alimentum in no time, considering you’ve been limiting dairy & soy. alimentum still has milk proteins in it-they are very very broken down, but they’re there- so your breastmilk most likely is pretty much like alimentum now- so the next step would be to make your milk like neocate (see #3 below)…

2) buy your own hemmocult strips to test the diapers yourself. this way YOU know what’s going on (info for this is in #5)

3) you CAN do the TED. if it’s too overwhelming right now, ‘just’ start with milk and soy. you say you’ve eliminated them, but have you TOTALLY? have you been reading ingredients to make sure you are not eating any ‘hidden’ dairy or soy? have you checked ingredients in your vitamins, etc? if you have not gotten to this step of eliminating ALL milk and soy, then this is a place to start w/o having the overwhelming TED in front of you..

4) if you ARE eliminating ALL dairy and soy, even ‘hidden’ dairy and soy and you’ve eliminated them for a good 3 weeks, then yes it might just be time to move on to the TED. you can do it! there is a lot of info here to help you and for you to know what to eat, etc.

5) you *need* to read this- look for the post by erintx:

Erin’s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

6) along with diet, medication is most likely necessary. it is rare for diet alone to work, although it did work, for the most part, with Erin (Link in #5) but even her baby needed medication- read her story & you’ll see…

7) from what you’ve posted it seems as though you and baby are happier with breastfeeding. if you decide to supplement or even switch to formula we are here for you! it’s just a hard road to go down- but it’s all hard…

8) here is info about the formulas, especially neocate & elecare, the ‘next’ formula after alimentum

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

[Anonymous]

Thanks ladies! You mommies are the best!

I’m worried that my DD has been exposed to too many proteins and that she’ll be allergic to everything… has anyone started “figuring it out” as late as I have (doctor suspected milk/soy problems at 4 mo… she’s now about 5 mo)? And what if I can’t figure it out??

[hellbennt]

one step at a time! it’s never too late!

just start with today

WHATEVER the proteins are, ‘all’ you need to do is to start now to keep

her away from them and it’s highly likely that she will be able to tolerate them down the road, maybe at 12 months, maybe at 15 months, etc.

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